By MATTHEW HOLT
Strap in for the tale of why your hero is spending most of his life down YouTube rabbit holes of cardiology videos while blundering his way around many many medical centers and exposing many problems with American health care even before he gets close to the operating table. Yes it’s Matthew Holt’s pre-surgical complications – the complications that have arisen before he even gets his failing aortic valve fixed. And yes this is a multi-parter! Part 1, Part 2
The first thing was to message the cardiac scheduling team to postpone the surgery set up for July, not least of which was because England was going to be the World Cup final two days after that and I didn’t want to be in intensive care in case they weren’t showing the game. Yes, yes, I know Messi and the cheating FIFA refs made sure that sadly didn’t happen!
I agreed with them to put a date on the calendar for September. But that didn’t stop a prep nurse calling me on Monday 29th June asking me about surgery on July 17th. She was most surprised to find that it wasn’t happening. Yet another time when the message didn’t quite get through.
Time to really figure out what this heart surgery involves.
Essentially if I wasn’t watching soccer from late June onwards I was trying to figure out what was known about valve replacement surgery. It was actually hard to find out both what the data is regarding TAVRs and the varying ways that surgical valve replacement can be done.
It turns out that going in through the chest bone, known as sternotomy, is the most usual way to do the surgical replacement of the heart valve but it’s not the only way.
This discovery took me a lot of effort not only asking chatGPT and Claude about the process but also trying to figure out who does what. I also spent a lot of time asking for advice and n honestly not getting much useful on the ValveReplacement SubReddit and looking on heartvalvesurgery.com, a website that seems to be sponsored by some surgeons and medical centers but is run by a patient called Adam Pick. I have been down the rabbit hole there and on YouTube and have more or less had to figure this out myself.
I was also reminded of the classic 1996 Fortune piece by then Intel CEO Andy Grove who was trying to figure out which approach to use to treat his prostate cancer. Basically he realized that the radiologists and the surgeons didn’t talk to each other and didn’t compare results, and he – the patient – had to figure it out from the rather poor data available, and talking to other patients on Compuserve! Well, it was 1996.
It turns out that there are several different options possibly available to me. But in terms of coordination and the patient journey, I’m not sure that we’ve come a long way since Andy Grove’s piece 30 years ago.
The TAVR is about 15 years old. It’s still primarily used in those over 70 who could not easily recover from or survive open heart surgery. But it has a ton of advantages. You’re out of hospital in one day, not 4-5. You’re not put on a heart-lung machine, and the skill required to get the exact placement correct will soon be aided by AI and micro robots like this one from Carvolix.
But there’s no really good data about whether the valves inserted by TAVR last as long as the similar tissue valves inserted via OHS.
So yes, it’s the old health care story. There’s not enough data.
And then there’s the actual valve problem that I have. There are two groups of people with aortic valve problems
The first of those have some kind of genetic issue and if you read Reddit you’ll find a lot of people in their 20s and 30s who have had mechanical as opposed to tissue valves implanted because they need to last a very long time. These people were not as lucky as me getting all the way to their 60s without discovering the genetic defect, but actually the estimate is that about half the people with bicuspid valves like me actually die with them not because of them.
But the bicuspid gang are a small minority. Most people needing a valve replacement have a regular tricuspid valve – it kind of looks like a Mercedes symbol – but over time either it wears out or they get excessive amounts of calcium deposited on it. Those are the ones who used to get open heart surgery in their 70s and ’80s and now get a TAVR because it doesn’t really matter if that valve only lasts 10 years.
If you look at the number of aortic valve replacements done in the US, the vast majority are now done on those older people via TAVR. In fact Medicare which only would pay for it for those over 70 just changed its guidelines in June 2026 and will now pay for anybody over 65.
But in my case not only do I have a Bicuspid valve but it is heavily calcified on one side. This leads to the concern that the valve is oval shaped while the replacement artificial valve is round and therefore may not fit very well.
The consensus seems to be that the younger the patient the worse the TAVR valves do, and that bicuspid valves are particularly poorly suited for TAVR. Meanwhile, if you are rabbit-holing Youtube looking into clinical studies that might matter greatly to you, this kind of statement isn’t really what you’re looking for!
“We have to be careful, these are only up-to-one-year follow-up outcomes, so kind of short-term outcomes. It doesn’t say anything about the long-term outcomes, because that’s still a whole other story. Also, by the way, we don’t have any data in the literature beyond two years of TAVR bicuspid — believe it or not, we’ve already been doing this for quite some years in many centers worldwide — TAVR bicuspid, and we don’t have any data on TAVR durability beyond two years.” Cardiolgist Ole De Backer in 2024
On the other hand there is just not very much good data about TAVRs in bicuspid patients, and in fact I found out from the hot valve surgery website that Cedars Sinai is about to start a trial about TAVR for those patients.
Then there is the mini sternotomy I was offered at UCSF. I was told no driving for 4 weeks after surgery and that the chest bone will still take 8 to 12 weeks to heal.
A much smaller minority of valve replacements are done by accessing the heart through the right rib cage. The initial way this was done was by putting a pretty big incision between the ribs and moving them out of the way. Having lived through the pain of a broken rib a few years back, I’m not sure this sounded a lot less gentle than going through my sternum. But I looked into it and Claude told me that there was somebody at UCSF who did this and also that there was a group in West Virginia doing RAVR (robot assisted valve replacement) on an endoscopic basis.
And looking on heartvalvesurgery.com there was a video about a surgeon at Alta Bates in Oakland (near me) who did endoscopic valve replacement also via the ribs.
Finally, Cleveland clinic put out a news report about a year ago about one of their surgeons who had an entirely different technique for valve replacement, using a transcervical approach, essentially going in through the neck. The recovery from that seemed super quick–just a week back to normal activity.
So for those of you counting at home there is the TAVR and potentially five different surgical techniques. Because of the success of the TAVR, there’s just not that much “demand” for surgical replacement or for developing better ways of doing it which is why only a limited number of surgeons do these non-sternotomy techniques.
What does the poor patient do?
The UCSF Cardiac team machine process rolled on. I was given an appointment for a carotid ultrasound and then for a full angiogram. Both to see if I had “traditional” heart disease. Despite decades of bad American diet it seems that a few years of statins did their trick and I don’t actually have any.
Worth mentioning that without really communicating with me about it I was no longer under the care of my original cardiologist Dr Elmariah. The angiogram was performed by a team led by Dr. Yerem Yeghiazarians, who everyone called Dr Y-Y. I still received fantastic care and the procedure went off very smoothly. I was a tad nervous about the angiogram but I really barely noticed it.
So now it’s early July, the World Cup is heating up, I’m basically spending the rest of my time trying to figure out what to do and who to talk to. As you might expect this is where the full intricacies and complications of the American healthcare system come into view.
I didn’t actually think UCSF could do much more to inform me as they basically wanted me to have the mini-sternotomy, but I did want to talk to Dr Yeung at Stanford who had seen my original Echo the previous year. He is a very highly regarded interventional cardiologist. Perhaps he will be prepared to do a TAVR on me?
In addition I wanted to talk to the people at Cleveland clinic and find out who was doing this neck entry robotic technique with the one week recovery. And also what about the rib entry technique that was done with the robot?
Finally I knew about that clinical trial for bicuspid patients undergoing TAVR at Cedars Sinai in Los Angeles.
(Part 4 coming soon)
Matthew Holt is publisher of THCB
Publisher: Source link
